Up to now, I had never had to watch someone close to me prepare for death. I knew it would happen eventually, but I had not considered how much it would occupy my attention, now how much I could learn from it. I am now watching my godparents and my grandfather, three people I am very clost to, handle the prospect of death very differently.

My godparents have spent the past few years putting their affairs in order, ever since my godfather was diagnosed with esophageal cancer at almost 80 years old. They have taken extensive measures to ensure that everything is arranged and clearly laid out for the people they will be leaving behind.

After surgery and radiation therapy, my godfather’s cancer has been in remission for a few years and my godmother is as healthy and active as anyone her age. I don’t think of either of them as people who are dying. Therefore, I have an enormous amount of respect and gratitude for their efforts to sort out their affairs while they are still able to do so.

My godfather recently pointed out that you don’t realize how much you own or are responsible for until you have to make arrangements for when you are no longer there. I keep hoping that I’ll use my godparents as inspiration to prepare my life for the event of my untimely death, but that hasn’t yet happened.

Watching my grandfather, on the other hand, has been a very different experience. Unlike my godparents, my grandfather has a terminal condition, congestive heart failure (CHF). In addition, he has a disorder called myelodysplasia (commonly referred to by the general term, MDS), which essentially means that his blood cells aren’t able to function properly. The combination of these conditions has caused his health to decline severely over the past 18 months.

For the majority of that time, his main ailments have been due to CHF, including weakness and fatigue. Very recently however, his improperly functioning blood cells combined with his weak heart have started to take a toll on his mental faculties. While CHF is a chronic condition, with no long-term treatment other than a heart transplant, MDS can be treated with bone marrow or hematopoietic cell transplants. Due to the immune rejection risks of these therapies, my grandfather has not been eligible to receive them. The best option for him is weekly blood transfusions, which he is undergoing.

I knew that watching a loved one’s health decline would be difficult, but I didn’t think about how it would affect me as a scientist. The research project I’m performing for my PhD could one day be used to develop a commercially available cell therapy to replace allogeneic (cells donated from another human) hematopoietic cell transplants.

The cells I study could supply his body with functioning versions of every type of blood and immune cell, without having to worry so much about immune matching. These cells could be readily available in hospitals for patients, meaning that my grandfather could have started receiving treatment when he was diagnosed with MDS 18 months ago. He would still have had CHF, but his blood cells would be doing their jobs properly, and he would, arguably, have not had nearly so much mental deterioration.

My inability to help him as both a granddaughter and scientist has left me with a feeling of powerlessness as I watch him from the sidelines. All of my science and training can’t do anything to help him.

I’m trying to use this experience as motivation to progress my research project, but I feel like I’m spending too much time worrying about my grandfather to make that happen.

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Posted by Megan Livingston

Ms. Livingston is a PhD student studying Biochemistry & Cell Biology at UT MD Anderson/UTHealth Graduate School of Biomedical Sciences.

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